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The Sunday Series (27), with Mark Brodinsky

Everyone has a story. On Sunday, it’s yours. A way for others to be inspired by your heroism and help put all of our lives in perspective.

The Sunday Series (27): The Breath of Life

Life isn’t fair. But you hope you get the chance in life to wage a fair fight. Have a goal, make a plan, take a deep breath and take action. But what if breath won’t come easy, what if oxygen is hard to come by, what do you when good air is rare? You try your best to breathe… or maybe hold that breath and wait for a miracle. Sometimes miracles happen.

For Ashley Silcott, this is life. Breathing life into the future, to future plans, for the chance to make it day-to-day always seems to hang in the balance. Ashley has Cystic Fibrosis, (CF). It is a chronic, progressive and frequently fatal (genetic) inherited disease, primarily affecting the respiratory and digestive system. For much of Ashley’s time on this planet the hospital has become a second home. She’s been admitted more than 50 times, to get breathing treatments, medication, IV’s, and more.

Ashley was diagnosed with CF at birth. She says, “one day I feel great, the next I can barely function. I take over thirty pills a day and spend hours doing breathing treatments and physical therapy regimens just to try and stay healthy.” And then there’s the constant cough. The one Ashley says she’s had her whole life, the one for which kids made fun of her in school, the one for which other people think she’s contagious. The one that won’t ever go away.

The average life expectancy of someone living with Cystic Fibrosis…37. A little more than a decade from where 25-year-old Ashley is now in her life. But Ashley’s not average, she is determined to help change that number, to beat that “average”. One way to do it is to fight, the other, most unexpectedly for Ashley, is to become immortal. But immortality comes with a price. Ashley nearly paid with her life.

In January of 2013 Ashley was back at Johns Hopkins Hospital where she had been so many times for breathing treatments, to help fight off infection, to help her simply keep going. She had never stayed for more than 10 days, but this time the journey would be much, much longer. This time life would hang in the balance and that balancing act would affect more than just one life.

During this hospital stay Ashley wasn’t responding to treatment. Things were going downhill… and fast. “Each day, my symptoms worsened”, Ashley says. “I was eventually moved to a critical care floor where my resting heart rate resembled that of someone who had been working out vigorously for hours. I had high fevers, 103, 104…for hours each day. My body was in overdrive just trying to keep me alive. My kidneys began to fail. I was coughing up blood and throwing up hourly. I eventually lost control of my bladder and I could no longer walk because I was so weak. My body would collapse merely trying to stand. I was in such terrible, constant pain and agony that all I could think was, “this is it, this is the end. This is how twenty four years of fighting is going to end…” I was utterly terrified. I’ll remember the entire, horrible, terrifying experience for the rest of my life. Laying in the critical care bed, with my mom and dad, my husband Tyler and my cousin Abby beside me – I knew. I could feel it.”

And what Ashley could feel was more than a health crisis, it was despair. Because what she and Tyler had kept from the rest of the family was a secret, one they had, pre-hospital stay, gone to great lengths to research, to speak to the experts and talk about to each other, so they could tell their family the news with joy in their eyes and not fear in their hearts. Ashley was pregnant. It wasn’t planned, but it was reality and once it happened Ashley and Tyler were determined to bring this miracle of life to life.

But as she got sicker and sicker and a decision was made to move her to the Intensive Care Unit (ICU). The treatment plan Ashley had been approving, or disapproving, for fear it would affect her fetus, gave it all away. Finally her Dad overheard her conversation with the doctors, and Ashley broke down in tears as she admitted to her father she was with child. “My Dad took a long walk at that point”, Ashley says, “then came back and was more supportive than she could have imagined. My Mom was terrified, but supportive.” Yet now that it was out in the open, the life-changing decisions were getting tougher.

“If you have ever been pregnant, or loved someone that was carrying a baby, you can imagine the state of desperation and distress that I was in”, says Ashley. “I wanted this my entire life, the gift of being a mom. And now it was dangled in front of me. “You or the baby”. I chose both. There’s no question. For me there was no OR. It was then that I found out who my true loved ones were. Those that loved me accepted my decision to fight for BOTH of us, not just one. Others considered me selfish and foolish. Either way, I had made up my mind.”

But what you decide and what life decides to place in your path are often not on the same page. Things had gotten bad. Ashley was refusing treatments which could help her, but hurt the baby. And now she was no longer breathing on her own, on a ventilator, sedated and basically in a medically-induced coma, it was Ashley’s Dad, to whom she had given medical power of attorney, who made the decision for treatments to save her life. But the ventilator was no longer helping Ashley to breathe and the doctors and the family agreed a tracheostomy (trache) would be necessary. They woke Ashley to tell her what would happen next.

Ashley still remembers what it felt like after she learned the news, knowing the procedure would happen the next day, if not sooner: “I knew this day would come. Everything I’ve ever read, heard or witnessed about Cystic Fibrosis proved that. CF is a vicious monster that doesn’t stop. It’s unpredictable. Perfectly healthy 50-year-olds are living with CF over here. And a three-year-old is dying because of it over there. Unpredictable. CF does not discriminate. And it is downright cruel. And that’s how I went to sleep. Convinced that I would die right there that very night in my sleep. Heartbroken. Silent. Defeated.

Ashley continues, “I drifted off to the most panicked, restless sleep of my life. My hand on my precious stomach, praying to whoever was listening. Pleading and begging for another chance. Because apparently that’s what you do when you’re dying, you cling to life like never before. And I was literally, clinging to life. I held my stomach, somehow hoping that this little person inside me could feel that I loved them. I just hoped that he or she knew that I tried. And off to sleep we went. Surely to meet angels tonight. Or so I thought.”

But that night prayers were answered… sometimes miracles happen.

“I woke up and couldn’t believe I was alive”, says Ashley. “My mom and the respiratory therapist came in and told me I had been breathing on my own for an hour. They took the ventilator out and I started talking, slowly at first. Progress, progress throughout the day. I had not stood up in a month. I had lost more than 20 pounds. I was just so small. No muscle mass, no fat. In an insanely short amount of time, about two weeks, I was out of the hospital.”

By Valentine’s Day, the baby, “popped”, meaning Ashley now had the pregnancy belly. She says she gained about 10 pounds nearly overnight.

Pregnancy was tough, because Ashley was still doing rehab and needed help with walking and was incredibly anxious about the health of the baby, calling the doctor at least twice a day every time she thought the baby had stopped moving.

But on June 26th, life moved forward in a way which has changed Ashley’s life. Despite coming six weeks early, Preslee, at 6-pounds, 10-ounces, was born. Healthy, with no signs the little girl had endured any stress, Preslee was perfect.

This was the breath of life Ashley and Tyler had been waiting for. “She (Preslee), has made me fight one-thousand times harder than I ever thought I could”, says Ashley. I’m coming up on one-year-hospital-free. That has never happened. She just keeps me going. I don’t have time to rest, or to get sick. She’s the reason I take my medicine, the reason I get up every day. I no longer think about being sick. It no longer has power over me. The love I have for her is stronger than any medicine out there.”

For Ashley the fight isn’t over, it never will be until she says the letters, CF, which stand for Cystic Fibrosis, can stand for Cure Found. You can help. Learn more or donate at, http://fightcf.cff.org/goto/ashleysarmy

I asked Ashley what one thing she thinks she can share to inspire others from her experience. She said it’s one word… hope. “I think I never let go of hope, because hope prevails. It can be tough, but it’s worth holding onto. If you’re not positive, if you let yourself go to a dark place, it won’t work. I think it’s staying positive. I thought positive throughout the entire experience and it brought me to where I am today. It has made me a stronger and more motivated person. Whatever you are going through in life, I think you have to have hope you can get to a better place.”

It’s hope and maybe just a little inspiration, a breath of fresh air, the breath of life, from a little girl named Preslee.

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Blog Reviews

Love seeing new blogs hit the ground running like this one (by a dad no less), but I also urge anyone vaguely interested in blogging to stay tuned, I am. Good luck on your journey – glad that I am along for the ride.

Rachel Blaufeld

Great blog Mark! I always appreciate reading what you have to say. You are very gifted and talented and hopefully someday you’ll not just blog, but write a book.

Stephen Koncurat

I’m definitely along for the ride. We’ve all seen how much damage the written word can inflict. More positive writers are needed. And I love how you are using your personal experiences – those with your wife and children – and your gift of writing to open eyes and to inspire others.

Victoria Endicott

Absolutely beautifully written! The girls in your life must be very proud of you. Thanks for sharing Mark, I look forward to reading more!

Gina Glick Jolson

Very shortly this site will be famous amid all blogging and site-building users, due to it’s pleasant posts.

Leila Galloway

Absolutely beautiful! Are you at all thinking of penning a book? You’ve got a fan base out there that really thinks you should Mark. You write so eloquently. Glad that I got onto this site.

Marilyn Lefkowitz

Mark, You are truly a gifted writer and obviously, a special father and husband . Always a delight to read your words.

I’m speechless…beautiful words flow from your heart just like a gentle waterfall into a tranquil stream… thank you so much for the friend request I was blessed the day I clicked confirm.

Lynne Turner Dorsey

From your first writing in 4th grade entitled “People” which was published in the school newspaper, you have always been able to write. Never more so than when you started “Caringbridge” and now your blog, everyone who reads says what a wonderful writer you are. Our DREAM for you is to become an author and encourage people every day. You are by the far the best and we hope and pray you reach your dream.

Bonnie Brodinsky

I know you always thank us for reading but I would like to say thanks for writing.

Stuart Abell

Great piece. You are an inspiration!

Rob Commodari

Mark I just wanted to let you know that you are succeeding in your “ultimate goal”. I have gained so much from your blogs. I look forward to reading them for the special lift that they give me. Thank you.

Amy F.

I love waking up and starting my day with my coffee and your blog! It a great way to start my day with positive uplifting thoughts!! It puts me in a positive frame of mind throughout the day and allows me to reflect on my personal life, make changes, and grow !!!

Gayle Blank

You are quite talented Mark. Thanks for sharing!

Cynthia

I always look forward to your Blog Mark. Thanks for sharing and as you always do, make it a great / remarkable Day!

Chuck Connolly

Thanks for your Blog Mark. It is fun, encouraging and a nice break from a day full of ups and downs.

Jackie Hetrick

With my busy schedule, there is (sadly) little time for reading. But I have two must-reads every time I come across them, the sports section and your blogs. Keep inspiring and following your dream!

Ed Nemec

Mark, you are a truly remarkable individual. You do speak from your heart, I can’t wait to read your book. You are an incredible writer.

Debbie Press

Mark, I am glad I clicked on your post this morning, which lead me to your writing, your goal.
Would like to connect. This speaks to me.

Aileen Braverman

I can’t wait to read the book. I have followed all the blogs and feel so good that I know u guys. You make me cry but you make me laugh too. All the very best to you!

Beverlee Rendelman

Connect with Mark!

WOW!!! It Takes 2 is a must read for anyone who has known someone diagnosed with cancer or other life threatening disease. This is the real story of a family lead by an incredible woman, Debbie Brodinsky, who took radical steps to beat the breast cancer beast. The story is told by her husband, Mark Brodinsky, through journal entries he kept starting with diagnosis through one year cancer free. This author's unique ability to pour his heart out onto the page draws you in from the beginning and holds you until the very end.

Thanks to Mark and Debbie Brodinsky for this gift...I have a new perspective on what it means to be a breast cancer survivor. You are a hero, Debbie Brodinsky!

TeeBThree
September 25, 2013

This book gives a heartfelt, in depth description of what it is like to go through breast cancer with the one you love. It is beautifully written and I felt as though I was living it with them! I highly recommend this book!

Jgs17September 24, 2013

In It Takes 2, Mark Brodinsky windows us into his world where his wife, the cancer patient, is not the only victim. Part journal, part roadmap, It Takes 2 goes to the real humanity of facing the mortality of one's better half. Mark's candid perspective, love, and fierce intention resonate with hope in a story which is about much more than cancer. Mark himself is perhaps the most heroic character for the way he appreciates this life and so many of us in it...as he says, "thanks for caring."

Réné PallaceSeptember 24, 2013

It Takes Two: A Spouse's Story by Mark Brodinsky should be read by every person who is experiencing serious illness or injury or by a loved one of someone who is experiencing either of those situations. The book is an eloquent testament to the power of love and the healing energy derived from the belief that things will get better. There is not one word of "poor me" from the author or his wife who suffered breast cancer and the radical surgery she elected to have to beat the cancer. Rather, the book is a celebration of the courage displayed by them both in seeing it through.

The book also encourages readers to speak and write down their true feelings and be validated in them. John Mackovic writing in the Palm Springs, CA Desert Sun on November 2, 2013 quoted author and artist Doe Zantamata who said, " To be happy, you don't have to do anything new. You just have to remember how to believe again...Believe everything good is possible. Believe in your dreams. Believe in people. Believe in love. But most of all...believe in yourself." The author, his wife, their family and extended family and friends never stopped believing in his wife's recovery, and I think, in themselves. Read this book and believe.

Paul A. RiecksNovember 4, 2013

This book is a must read for anyone with a family member with breast cancer. It takes you through the spouse's perspective from diagnosis to recovery. Mark journaled his wife's journey and put all of his emotions out there. It is beautifully written and inspiring to anyone going through breast cancer. Thank you, Mark for sharing Debbie's story.

Jmu1109October 23, 2013

A friend recommended this book. This was a great perspective of a man standing beside his partner and passing along to the reader fear, hope, useful information and a broader story than his own. I loved Vinnie the tattoo artist. This is a great book. Thanks for sharing, Mark and "thanks for caring"

Blahsan

This book is a must read. What sets this book apart from other books about surviving breast cancer is that it is told by the husband and his point of view, not from the survivor. At times sad, at times poignant but even through the worst of it you can always feel the love he has for his wife, her strength and the strength of their extended family and friends. The posts that are included from their friends and family lets you really into the heart and strength of the family. I would recommend this book to anyone who is currently going through this, whether you are the person or the caregiver. I also recommend this book to anyone who has a friend that has been or is currently going through their fight now. It was an eye opener for me.

L. BogashSeven Valleys, PA

There isn't a shortage of books about breast cancer, but most are written from the perspective of the person who has battled cancer or a physician or other expert. What an enlightening experience to read about breast cancer from a husband and caregiver's perspective! Not only does the author give us insight into his wife's experience and emotions, but he openly shares and reveals his love, compassion, support, and, yes, sometimes anger at the disease as he stands by his wife's side during their journey to beat the beast. Your story may not be the same, but I guarantee if you have a loved one battling cancer, you won't go wrong reading It Takes 2.

PattiMSeptember 25, 2013

From the moment I opened this book I never stopped reading. Mark invites the reader to come along on this journey that his family went through. I cried, laughed and learned so much. This book will give comfort and knowledge to those going through similar situations. Most importantly, Mark and his family never give up. They get knocked down and get right back up. They fought cancer together and with their strength, determination and will to prevail... They do!

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